Search

Item does not contain fulltext OBJECTIVE: Appropriate palliative care communication is pivotal to optimizing the quality of life in dying patients and their families. This review aims at describing communication patterns in palliative care and discussing potential relations between communication patterns and upcoming telecare in the practice of palliative care. METHODS: This review builds on a systematic five-step qualitative analysis of the selected articles: 1. Development of a 'descriptive table of studies reviewed' based on the concept of genre, 2. Open coding of table content and first broad clustering of codes, 3. Intracluster categorization of inductive codes into substantive categories, 4. Constant inter- and intracluster comparison results in identification of genres, and 5. Labeling of genres. RESULTS: This review includes 71 articles. In the analysis, two communication genres in palliative care proved to be dominant: the conversation to connect, about creating and maintaining a professional-patient/family relationship, and the conversation to instill realism, about telling a clinical truth without diminishing hope. CONCLUSION: The abovementioned two genres clarify a logical intertwinement between communicative purposes, the socio-ethical background underlying palliative care practice and elements of form. PRACTICE IMPLICATIONS: Our study supports understanding of current communication in palliative care and anticipates future communicative actions in an era of new communication technologies.

Background: In pediatrics, the “best interest” standard has become the prevailing standard in decision making even though it proves difficult to apply in practice. Differences in values can lead to different views by families and physicians of what is in the interest of a child. Our aim was to gain insight into the views of parents, children, and physicians in a pediatric oncology setting. Methods: We conducted a qualitative multicenter study, using in-depth semistructured interviews, with 21 children aged 8–18 years undergoing cancer treatment, 26 parents, and 15 pediatric oncologists. Results: At the onset of treatment, parents, children, and physicians had the same views on what is in the interest of the child: survival by following the treatment protocol. In the course of treatment, however, a transition takes place. For families, what constitutes the best interests expands beyond medical considerations, to include the wish to lead a normal life, having control over certain aspects of treatment, and m...

Item does not contain fulltext Phenomenological healthcare research should include the lived experiences of a broad group of healthcare users. In this paper it is shown how shadowing can give a voice to people in vulnerable situations who are often excluded from interview studies. Shadowing is an observational method in which the researcher observes an individual during a relatively long time. Central aspects of the method are the focus on meaning expressed by the whole body, and an extended stay of the researcher in the phenomenal event itself. Inherent in shadowing is a degree of ambivalence that both challenges the researcher and provides meaningful insights about the phenomenon. A case example of a phenomenological study on the experiences of elderly hospital patients is used to show what shadowing yields.

Item does not contain fulltext OBJECTIVE: Incidental findings in prenatal diagnostic testing may or may not have clear prognostic significance for the phenotype. We studied experts' opinions of the benefit and disadvantage of an incidental prenatal diagnosis of a sex chromosomal aneuploidy (SCA). METHODS: We interviewed 16 experts in the field of counseling and treatment of people with SCA and asked 13 clinical geneticists and genetic associates about the clinical relevance of an incidental prenatal diagnosis of SCA. RESULTS: Most of the experts and clinical geneticists (87.5% and 76.9%, respectively) stated that an incidental prenatal diagnosis of SCA was a benefit for the child and the parents. They acknowledged the possibility of parental decisions to terminate pregnancy. Expert options in screening, training, and treatment of health, behavior, and fertility problems increase with an early diagnosis of SCA. CONCLUSION: Most experts favored an incidental prenatal diagnosis of SCA despite the complex counseling issues and their acknowledgment of possible parental decisions to terminate pregnancy. They believed the benefits greatly outweigh the disadvantages. (c) 2012 John Wiley & Sons, Ltd.

Item does not contain fulltext BACKGROUND: The Fc receptors II and III (FcgR2a, and FcgR3a) play a crucial role in the regulation of the immune response. The FcgR2a*519GG and FcgR3a*559CC genotypes have been associated with several autoimmune diseases including systemic lupus erythematosus, rheumatoid arthritis, nephritis, and possibly to type I diabetes, and celiac disease. In a large multicenter, two-stage study of 6570 people, we tested whether the FcgR2a and FcgR3a genes were also involved in inflammatory bowel disease (IBD), which includes Crohn's disease (CD) and ulcerative colitis (UC). METHODS: We genotyped the FcgR2a*A519G and FcgR3a*A559C functional variants in 4205 IBD patients in six well-phenotyped Caucasian IBD cohorts and 2365 ethnically matched controls recruited from the Netherlands, Spain, and New Zealand. RESULTS: In the initial Dutch study we found a significant association of FcgR2a genotypes with IBD (P-genotype = 0.02); while the FcgR2a*519GG was more common in controls (23%) than in IBD patients (18%; odds ratio [OR] = 0.75; 95% confidence interval [CI] 0.61-0.92; P = 0.004). This association was corroborated by a combined analysis across all the study populations (Mantel-Haenszel [MH] OR = 0.84; 0.74-0.95; P = 0.005) in the next stage. The Fcgr2a*GG genotype was associated with both UC (MH-OR = 0.84; 0.72-0.97; P = 0.01) and CD (MH-OR = 0.84; 0.73-0.97; P = 0.01), suggesting that this genotype confers a protective effect against IBD. There was no association of FcgR3a*A559C genotypes with IBD, CD, or UC in any of the three studied populations. CONCLUSIONS: The FcgR2a*519G functional variant was associated with IBD and reduced susceptibility to UC and to CD in Caucasians. There was no association between FcgR3a*5A559C and IBD, CD or UC. 01 december 2010

Contains fulltext : 88713.pdf (Publisher’s version ) (Closed access) OBJECTIVE: To evaluate the efficacy of the Nijmegen Falls Prevention Program (NFPP) for persons with osteoporosis and a fall history in a randomized controlled trial. Persons with osteoporosis are at risk for fall-related fractures because of decreased bone strength. A decrease in the number of falls therefore is expected to be particularly beneficial for these persons. DESIGN: Randomized controlled trial. SETTING: Hospital. PARTICIPANTS: Persons with osteoporosis and a fall history (N=96; mean +/- SD age, 71.0+/-4.7y; 90 women). INTERVENTION: After baseline assessment, participants were randomly assigned to the exercise (n=50; participated in the NFPP for persons with osteoporosis [5.5wk]) or control group (n=46; usual care). MAIN OUTCOME MEASURES: Primary outcome measure was fall rate, measured by using monthly fall calendars for 1 year. Secondary outcomes were balance confidence (Activity-specific Balance Confidence Scale), quality of life (QOL; Quality of Life Questionnaire of the European Foundation for Osteoporosis), and activity level (LASA Physical Activity Questionnaire, pedometer), assessed posttreatment subsequent to the program and after 1 year of follow-up. RESULTS: The fall rate in the exercise group was 39% lower than for the control group (.72 vs 1.18 falls/person-year; risk ratio, .61; 95% confidence interval, .40-.94). Balance confidence in the exercise group increased by 13.9% (P=.001). No group differences were observed in QOL and activity levels. CONCLUSION: The NFPP for persons with osteoporosis was effective in decreasing the number of falls and improving balance confidence. Therefore, it is a valuable new tool to improve mobility and independence of persons with osteoporosis. 01 november 2010

Contains fulltext : 89628.pdf (Publisher’s version ) (Open Access) Treatment-failure gout (TFG) affects approximately 50,000 patients or about 1% of the overall population of patients with gout in the United States of America. The severity of TFG is manifested by frequent acute attacks of disabling arthritis, chronic deforming joint disease, destructive masses of urate crystals (tophi), progressive physical disability, and poor health-related quality of life. Pegloticase (Krystexxa((R)); Savient Pharmaceuticals, Inc), a novel PEGylated urate oxidase (uricase) enzyme, has been resubmitted for US Food and Drug Administration approval. In a 6-month, placebo-controlled clinical trial, 8 mg of pegloticase for every 2 weeks induced a lytic decrease of serum urate (sUr) concentrations, leading to dissolution of tophi in 40% of patients at final visit. However, 58% were nonresponders to the defined target sUr of 0.36 mmol/L (80% were nonresponders during months 3 and 6), possibly due to anti-body formation. Also, 26%-31% experienced infusion reactions (IRs) and 77% suffered from gout flares. Although long-term data are awaited, an anti-inflammatory strategy, eg, based on glucocorticosteroids, is needed to prevent pegloticase antibody formation leading to IRs and diminished or shortened efficacy, and might also prevent gout flares. According to the current clinical data, pegloticase might have an important role as a (bridging) treatment in sUr-responsive patients for tophi clearance in severe chronic refractory gout.

Contains fulltext : 88327.pdf (Publisher’s version ) (Closed access) BACKGROUND: Learning in a clinical environment differs from formal educational settings and provides specific challenges for clinicians who are teachers. Instruments that reflect these challenges are needed to identify the strengths and weaknesses of clinical teachers. OBJECTIVE: To systematically review the content, validity, and aims of questionnaires used to assess clinical teachers. DATA SOURCES: MEDLINE, EMBASE, PsycINFO and ERIC from 1976 up to March 2010. REVIEW METHODS: The searches revealed 54 papers on 32 instruments. Data from these papers were documented by independent researchers, using a structured format that included content of the instrument, validation methods, aims of the instrument, and its setting. RESULTS: Aspects covered by the instruments predominantly concerned the use of teaching strategies (included in 30 instruments), supporter role (29), role modeling (27), and feedback (26). Providing opportunities for clinical learning activities was included in 13 instruments. Most studies referred to literature on good clinical teaching, although they failed to provide a clear description of what constitutes a good clinical teacher. Instrument length varied from 1 to 58 items. Except for two instruments, all had to be completed by clerks/residents. Instruments served to provide formative feedback ( instruments) but were also used for resource allocation, promotion, and annual performance review (14 instruments). All but two studies reported on internal consistency and/or reliability; other aspects of validity were examined less frequently. CONCLUSIONS: No instrument covered all relevant aspects of clinical teaching comprehensively. Validation of the instruments was often limited to assessment of internal consistency and reliability. Available instruments for assessing clinical teachers should be used carefully, especially for consequential decisions. There is a need for more valid comprehensive instruments. 01 december 2010

Contains fulltext : 87712.pdf (Publisher’s version ) (Closed access) OBJECTIVES: Tight control studies including regular assessments of disease activity have shown that this approach has beneficial effects on disease activity, disability and joint damage in treating RA patients. Some of these studies included tight control with protocolized treatment, while others applied tight control without protocolized treatment. The aim of this study was to compare the effects of tight control with usual care and to compare the effects of tight control studies with and without protocolized treatment adjustments. METHODS: A systematic literature search was performed to identify clinical trials in RA that evaluated tight control strategies in comparison with usual care. Two types of study were compared: (i) those using disease activity monitoring with protocolized treatment adjustments, and (ii) those using disease activity monitoring without protocolized treatment adjustments. The databases PubMed and Cochrane were searched from 1995 up to 2009. Primary outcome measure was the mean change in the 28-joint DAS (DAS-28), which was used in a random-effects meta-analysis. RESULTS: Six controlled trials regarding tight control in RA patients were included in the meta-analysis. In all trials, patients treated in the tight control arms had significantly higher DAS-28 responses than patients treated according to usual care [weighted mean difference (WMD) = 0.59, P < 0.001]. Moreover, tight control was significantly more effective (P < 0.001) by means of protocolized treatment adjustments (WMD = 0.97) compared with non-protocolized monitoring of disease activity (WMD = 0.25). CONCLUSION: Tight control in RA resulted in significantly better clinical outcomes than usual care. It is suggested but not proved that tight control with protocolized treatment adjustments is more beneficial than if no such protocol is used. 01 november 2010

Contains fulltext : 88838.pdf (Publisher’s version ) (Closed access) BACKGROUND: Systemic sclerosis (SSc) is an autoimmune disease and accumulating evidence suggests a role for Toll-like receptor (TLR)-mediated activation of dendritic cells (DCs). OBJECTIVE: To map TLR-mediated cytokine responses of DCs from patients with SSc. METHODS: 45 patients with SSc were included. Patients were stratified as having diffuse cutaneous SSc (dSSc) or limited cutaneous SSc (lSSc) according to the extent of skin involvement, and further divided into those with late (>3 years) or early disease (

Contains fulltext : 87756.pdf (Publisher’s version ) (Closed access) BACKGROUND: Response shift theory suggests that improvements in health lead patients to change their internal standards and re-assess former health states as worse than initially rated when using retrospective ratings via the then-test. The predictions of response shift theory can be illustrated using prospect theory, whereby a change in current health causes a change in reference frame. Therefore, if health deteriorates, the former health state will receive a better rating, whereas if it improves, the former health state will receive a worse rating. OBJECTIVE: To explore the predictions of response shift and prospect theory by relating subjective change to objective change. METHODS: Baseline and 3-month follow-up data from a cohort of rheumatoid arthritis patients (N = 197) starting on TNFalpha-blocking agents were used. Objective disease change was classified according to a disease-specific clinical outcome measure (DAS28). Visual analogue scales (VAS) for general health (GH) and pain were used as self-reported measures. Three months after starting on anti-TNFalpha, patients used the then-test to re-rate their baseline health with regard to general health and pain. Differences between then-test value and baseline values were calculated and tested between improved, non-improved and deteriorated patients by the Student t-test. RESULTS: At 3 months, 51 (25.9%) patients had good improvement in health, 83 (42.1%) had moderate improvement, and 63 (32.0%) had no improvement or deteriorated in health. All patients no matter whether they improved, did not improve, or even became worse rated their health as worse retrospectively. The difference between the then-test rating and the baseline value was similarly sized in all groups. CONCLUSION: More positive ratings of retrospective health are independent of disease change. This suggests that patients do not necessarily change their standards in line with their disease change, and therefore it is inappropriate to use the then-test to correct for such a change. If a then-test is used to correct for shifts in internal standards, it might lead to the paradoxical result that patients who do not improve or even deteriorate increase significantly on self-reported health and pain. An alternative explanation for differences in retrospective and prospective ratings of health is the implicit theory of change which is more successful in explaining our results than prospect theory. 01 september 2010

Contains fulltext : 88603.pdf (Publisher’s version ) (Closed access) OBJECTIVE: To describe the frequency and effectiveness of dose increase of adalimumab, etanercept, and infliximab in the treatment of rheumatoid arthritis (RA) in daily clinical practice. METHODS: All RA patients with a dose increase of tumor necrosis factor (TNF)-blocking therapy between January 1997 and January 2008 were selected from a register including data from RA patients starting a first TNF-blocking agent (the Dutch Rheumatoid Arthritis Monitoring registry). The primary outcome was change in Disease Activity Score in 28 joints (DAS28) at 3 months after dose increase. Secondary outcomes were the change in DAS28 at 6 months after dose increase, the European League Against Rheumatism response rates, and the percentages of patients reaching a DAS28 of

Objective.Toll-like receptors (TLR) have been implicated in the pathogenesis of arthritis. We investigated the role of functional variants of TLR in the disease phenotype and severity of rheumatoid arthritis (RA).Methods.All patients from a longterm observational inception cohort (n = 319) were genotyped for 22 single-nucleotide polymorphisms (SNP) in TLR2, 3, 4, 5, 7, 8, and 9 using multiplex assays. Clinical characteristics including sex, age at disease onset, rheumatoid factor (RF), and shared epitope positivity and disease activity score and radiological progression were taken into account. Genotypes were analyzed for association with Disease Activity Scores (DAS28) and joint damage (Rau scores) at 3 and 6 years.Results.After Bonferroni correction, there was a moderate association between RF positivity and TLR8-rs5741883. No other TLR variant was significantly associated with any RA clinical characteristics.Conclusion.Using a large inception cohort and strict statistical evaluation, we could not identify an association between functional TLR variants and RA phenotype and disease severity. This suggests the functional TLR variants do not play a major role in RA phenotype and disease severity.

Item does not contain fulltext The number of national bioethics commissions has burgeoned since the establishment of the first one in 1983. They provide an arena in which stakeholders with widely differing moral views can discuss, interact and negotiate about controversial matters. The establishment of the Brazilian committee is used as an example of how such bodies can be introduced. If such councils are to be implemented effectively and regarded as legitimate, the society as a whole should be included in the construction of the proposal and represented on the council, the council should have the benefit of specialist advice when that is needed, and the council should be linked to the elected government in an official advisory capacity. The article describes long process of planning and consultation to establish Brazil's National Bioethics Council and of eventually defining its task as advising the president on matters relating to bioethics. 01 februari 2010

Contains fulltext : 89062.pdf (Publisher’s version ) (Closed access) OBJECTIVE: The treatment of patients with fibromyalgia (FM), a high-prevalence chronic pain condition with a high impact on both patients and society, poses a great challenge to clinicians due to a lack of effective treatments. In view of the large individual variability in outcome, selecting patients at risk of long-term dysfunction and offering tailored treatment may be promising for beneficial treatment effects. METHODS: High-risk patients were selected and classified into 2 groups (pain-persistence and pain-avoidance groups) and subsequently randomized in groups to either a treatment condition (TC) or a waiting list control condition (WLC). Treatment consisted of 16 sessions of cognitive-behavioral therapy (CBT) and exercise training in groups, tailored to the patient's specific cognitive-behavioral pattern, delivered within 10 weeks. Physical and psychological functioning and impact of FM were assessed at baseline, posttreatment, and 6-month followup. Treatment effects were evaluated using a linear mixed model. RESULTS: The treatment effects were significant for all primary outcomes, showing significant differences in physical (pain, fatigue, and functional disability) and psychological (negative mood and anxiety) functioning, and impact of FM for the TC in comparison with the WLC. Effect sizes in the TC were overall large, and reliable change indices indicated a clinically relevant improvement among the TC. CONCLUSION: The presented results demonstrate for the first time that tailored CBT and exercise training for high-risk patients with FM is effective in improving short- and long-term physical and psychological functioning, indicating that tailoring treatment is likely to promote beneficial outcomes in FM and reduce the burden for patients and society. 01 oktober 2010

Contains fulltext : 89257.pdf (Publisher’s version ) (Closed access) BACKGROUND: Most cases of acute gouty arthritis are diagnosed in primary care and without joint fluid analysis in many instances. Our objectives were to estimate the validity of this diagnosis by family physicians and to develop a diagnostic rule. METHODS: Patients with monoarthritis recruited in an open Dutch population with gout by family physician diagnosis were enrolled in a diagnostic study (March 24, 2004, through July 14, 2007). Validity variables were estimated using 2 x 2 tables, with the presence of synovial monosodium urate crystals as the reference test. For development of the diagnostic rule, clinical variables (including the presence of synovial monosodium urate crystals) were collected within 24 hours. Statistically significant variables and predefined variables were separately entered in multivariate logistic regression models to predict the presence of synovial monosodium urate crystals. Diagnostic performance of the models was tested by receiver operating characteristic curve analysis. The most appropriate model was transformed to a clinically useful diagnostic rule. RESULTS: Three hundred twenty-eight patients were included in the study. The positive and negative predictive values of family physician diagnosis of gout were 0.64 and 0.87, respectively. The most appropriate model contained the following predefined variables: male sex, previous patient-reported arthritis attack, onset within 1 day, joint redness, first metatarsophalangeal joint (MTP1) involvement, hypertension or 1 or more cardiovascular diseases, and serum uric acid level exceeding 5.88 mg/dL (to convert serum uric acid level to micromoles per liter, multiply by 59.485). The area under the receiver operating characteristic curve for this model was 0.85 (95% confidence interval, 0.81-0.90). Performance did not change after transforming the regression coefficients to easy-to-use scores and was almost equal to that of the statistically optimal model (area under the receiver operating characteristic curve, 0.87; 95% confidence interval, 0.83-0.91). CONCLUSIONS: The validity of family physician diagnosis of acute gouty arthritis was moderate in this study. An easy-to-use diagnostic rule without joint fluid analysis was developed for their use.

Contains fulltext : 88471.pdf (Publisher’s version ) (Closed access) OBJECTIVE: To investigate the possible association of the BANK1 gene with genetic susceptibility to systemic sclerosis (SSc) and its subphenotypes. METHODS: A large multicentre case-control association study including 2380 patients with SSc and 3270 healthy controls from six independent case-control sets of Caucasian ancestry (American, Spanish, Dutch, German, Swedish and Italian) was conducted. Three putative functional BANK1 polymorphisms (rs17266594 T/C, rs10516487 G/A, rs3733197 G/A) were selected as genetic markers and genotyped by Taqman 5 allelic discrimination assay. RESULTS: A significant association of the rs10516487 G and rs17266594 T alleles with SSc susceptibility was observed (pooled OR=1.12, 95% CI 1.03 to 1.22; p=0.01 and pooled OR=1.14, 95% CI 1.05 to 1.25; p=0.003, respectively), whereas the rs3733197 genetic variant showed no statistically significant deviation. Stratification for cutaneous SSc phenotype showed that the BANK1 rs10516487 G, rs17266594 T and rs3733197 G alleles were strongly associated with susceptibility to diffuse SSc (dcSSc) (pooled OR=1.20, 95% CI 1.05 to 1.37, p=0.005; pooled OR=1.23, 95% CI 1.08 to 1.41, p=0.001; pooled OR=1.15, 95% CI 1.02 to 1.31, p=0.02, respectively). Similarly, stratification for specific SSc autoantibodies showed that the association of BANK1 rs10516487, rs17266594 and rs3733197 polymorphisms was restricted to the subgroup of patients carrying anti-topoisomerase I antibodies (pooled OR=1.20, 95% CI 1.02 to 1.41, p=0.03; pooled OR=1.24, 95% CI 1.05 to 1.46, p=0.01; pooled OR=1.26, 95% CI 1.07 to 1.47, p=0.004, respectively). CONCLUSION: The results suggest that the BANK1 gene confers susceptibility to SSc in general, and specifically to the dcSSc and anti-topoisomerase I antibody subsets. 01 april 2010

The 2009 Framework defines the joint Dutch national learning outcomes to be attained by medical students after completing their three-year master programme in medicine. The Framework thus helps to guarantee to society at large and to patients in particular that medical graduates who are starting out as practitioners have attained a certain professional level. This level is the aggregate of the physicians’ target profile, physicians’ (sub-) competencies to be achieved and the list of issues relating to illness and health. In addition, the Framework also defines the profile of the bachelor and the learning outcomes of the bachelor programme in medicine., GMS Zeitschrift für Medizinische Ausbildung; 27(2):Doc35; ISSN 1860-3572

BACKGROUND Hepcidin is an iron-regulatory peptide hormone that consists of 3 isoforms: bioactive hepcidin-25, and inactive hepcidin-22 and hepcidin-20. Hepcidin is instrumental in the diagnosis and monitoring of iron metabolism disorders, but reliable methods for its quantification in serum are sparse, as is knowledge of their relative analytical strengths and clinical utility. METHODS We developed a competitive (c)-ELISA and an immunocapture TOF mass-spectrometry (IC-TOF-MS) assay. Exploiting these 2 methods and our previously described weak cation exchange (WCX)-TOF-MS assay, we measured serum hepcidin concentrations in 186 patients with various disorders of iron metabolism and in 23 healthy controls. RESULTS We found that (a) the relative differences in median hepcidin concentrations in various diseases to be similar, although the absolute concentrations measured with c-ELISA and WCX-TOF-MS differed; (b) hepcidin isoforms contributed to differences in hepcidin concentrations between methods, which were most prominent in patients with chronic kidney disease; and (c) hepcidin concentrations measured by both the c-ELISA and IC-TOF-MS correlated with ferritin concentrations CONCLUSIONS c-ELISA is the method of choice for the large-scale quantification of serum hepcidin concentrations, because of its low limit of detection, low cost, and high-throughput. Because of its specificity for bioactive hepcidin-25, WCX-TOF-MS can be regarded as a valuable special-purpose assay for disorders with variable concentrations of hepcidin isoforms, such as chronic kidney disease.

Contains fulltext : 88609.pdf (Publisher’s version ) (Closed access) Most publications on the ethical aspects of genetic research into Alzheimer's Disease (AD) concentrate on the differences between the opinions of professionals and non-professionals. Differences in rating of morally relevant issues between groups of professionals have not yet been described. A modified Delphi study in two rounds was held to identify differences between groups of experts (i.e. clinicians, representatives of patient organisations, ethicists and persons with a commercial background). The strongest correlation was found between the opinions of ethicists and representatives of patient organisations (0.67) and between clinicians and ethicists (0.62). Moderate correlation (0.55) was found between the opinions of clinicians and representatives of patient organisations. Persons with a commercial background showed a weak correlation with clinicians (0.41), ethicists (0.35) and representatives of patient organisations (0.30). These differences in rating of morally relevant issues between various professional groups are relevant for clinical practice and dementia care, particularly the different rating of prenatal diagnosis found between clinicians and representatives of patient organisations. Interdisciplinary consultations between various professional groups -including at least researchers, clinicians and ethicists -are recommended to guarantee that all considerations will be incorporated into the debate on ethical issues of genetic research into AD. 01 april 2010

Contains fulltext : 80321.pdf (Publisher’s version ) (Closed access) BACKGROUND: In paediatric oncology, the risk of infertility due to treatment constitutes an important problem. For sexually mature male adolescents, sperm cryopreservation is an option, but discussing the topic is complex because of the sensitive nature and the limited time frame. In this article, we determined attitudes and preferred roles of physicians and parents towards discussing sperm banking with male adolescents. METHODS: Qualitative multi-centre study, using in-depth semi-structured interviews with 14 physicians and 15 parents of male adolescents undergoing cancer treatment. RESULTS: Although physicians and parents agreed that infertility would have a major impact on the future quality of life, they sometimes disagreed on whether the topic should be discussed with adolescents. Physicians always wanted a separate discussion with adolescents because of the sensitive nature and the experience that parents sometimes misjudged the stage of maturity of their son. Parents, however, wanted control over whether physicians discussed the topic with their child and what was said. Physicians did not accept this control and, when necessary, were willing to bypass the parents and discuss the topic with the adolescent even when parents refused consent. CONCLUSIONS: Physicians face the difficult task of balancing between their ideas of what is in the (future) interest of the adolescent and accommodating parental wishes. We argue that, because of the private character of sexuality and the potentially inadequate maturity assessment by parents, semen cryopreservation should be discussed separately with adolescent and parents. In addition, there should be an open communication with parents to address potential discomforts.

Item does not contain fulltext In the current debate about the pros and cons of routine (non-religious) neonatal circumcision (RNC), the emphasis is on medical justifications for the practice. Questions of human rights also are widely discussed. However, even if the alleged medical benefits of RNC were to outweigh the harms and risks, this is not a sufficient justification for RNC. The practice of RNC is questionable from a variety of viewpoints including not only the ideal of evidence-based medicine and human rights considerations, but also the notion of respect for bodily integrity.

Contains fulltext : 80784.pdf (Publisher’s version ) (Closed access) BACKGROUND: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. OBJECTIVES: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. Method: A modified Delphi study in two rounds RESULTS: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as "confidentiality of genetic information" and "implications of research for relatives" which changes the impact and application of existing ethical topics such as "informed consent" and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. CONCLUSIONS: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics.

Contains fulltext : 69614.pdf (Publisher’s version ) (Closed access) The concept of intrinsic value is often invoked to articulate objections to the genetic engineering of animals, particularly those objections that are not directed at the negative effects the technique might have on the health and welfare of the modified animals. However, this concept was not developed in the context of genetic engineering. Given this external origin, this paper critically examines the assumption that the concept of intrinsic value is suitable to articulate and justify moral objections more specifically directed at the genetic engineering of animals. I discuss four different theories of intrinsic value, two of which defend a moral concept of intrinsic value and two a non-moral one. I conclude that only a particular non-moral concept of intrinsic value is suitable to express specific objections to genetic engineering, because these objections can only be defended in the form of indirect duties regarding animals.

Contains fulltext : 69564.pdf (Publisher’s version ) (Open Access) This paper explores the relevance of the debate about ethical expertise for the practice of clinical ethics. We present definitions, explain three theories of ethical expertise, and identify arguments that have been brought up to either support the concept of ethical expertise or call it into question. Finally, we discuss four theses: the debate is relevant for the practice of clinical ethics in that it (1) improves and specifies clinical ethicists' perception of their expertise; (2) contributes to improving the perception of moral competence of non-ethicists; (3) gives insight into complementary styles of argumentation of ethicists and non-ethicists; and (4) contributes to the awareness of the problem of profession-building of (clinical) ethicists.

Item does not contain fulltext Solidarity is one of the four values in European healthcare. Solidarity has resulted from a long lasting process governed by the moral experiences of people who suffer and need support. Developments in the modern health care system defy that concept of solidarity in propagating individualized care and insurance. In the long run this might change the moral basis of healthcare.

Tissue engineering (TE) is a promising new field of medical technology. However, like other new technologies, it is not free of ethical challenges. Identifying these ethical questions at an early stage is not only part of science's responsibility toward society, but also in the interest of the field itself. In this review, we map which ethical issues related to TE have already been documented in the scientific literature. The issues that turn out to dominate the debate are the use of human embryonic stem cells and therapeutic cloning. Nevertheless, a variety of other ethical aspects are mentioned, which relate to different phases in the development of the field. In addition, we discuss a number of ethical issues that have not yet been raised in the literature.

Contains fulltext : 70383.pdf (Publisher’s version ) (Open Access) In a recent article, Steinkamp, Gordijn, and ten Have discussed a new way of thinking about the ethics consultant's ethical expertise. After critiquing their model of ethical expertise, along with the notion that discourse can and will enable ethicists to consult without over-reaching, this essay suggests that the debate about ethical expertise is intractable because it constitutes a 'tragic choice'.

Contains fulltext : 70184.pdf (Publisher’s version ) (Closed access) BACKGROUND: Nowadays, there is an increasing interest in the heritable aspects of Alzheimer's Disease (AD). The ethical implications of this kind of research are also attracting attention. However, relatively few open-ended qualitative studies have been carried out to study these aspects. OBJECTIVE: To explore and analyse ethical issues raised by genetic research into AD. METHODS: A modified focus group technique. RESULTS: Participants stressed the importance of relatives in genetic research and suggested a family consent procedure. The consent procedure ought to be more uniform within Europe and should allow for variation in the types of research being done. The long-term results of genetic research into AD are expected to be positive while the short-term results seem likely to be negative. The perception of AD as a disease could be changed by the results from genetic research into AD, and this could have effects at the individual level (feelings of guilt and responsibility for one's own health). CONCLUSIONS: (1) The role of the family in genetic AD research differs from its role in other biomedical research into AD. The development of a family consent procedure might solve some informed consent problems. (2) Negative social consequences of genetic AD research are expected in the short term, but there are hopes of positive consequences in the long term.

Item does not contain fulltext The idea that ethics is a matter of personal feeling is a dogma widespread among medical students. Because emotivism is firmly rooted in contemporary culture, the authors think that focusing on personal feeling can be an important point of departure for moral education. In this contribution, they clarify how personal feelings can be a solid basis for moral education by focusing on the analysis of compassion by the French phenomenologist Emmanuel Housset. This leads to three important issues regarding ethics education: (1) the necessity of a continuous attention for and interpretation of the meaning of language, (2) the importance of examining what aspect of "the other" touches one and what it is that evokes the urge to act morally and (3) the need to relate oneself to the community, both to the medical community and to collectively formulated rules and laws. These issues can have a place in medical education by means of an ethical portfolio that supports students in their moral development. First, keeping a portfolio will improve their expression of the moral dimension of medical practice. Second, the effects of self-knowledge and language mastery will limit the pitfalls of emotivism and ethical subjectivism and will stimulate the inclination to really encounter the other. Third, it will show medical students from the start that their moral responsibility is more than following rules and that they are involved personally.

Contains fulltext : 50984.pdf (Publisher’s version ) (Closed access)

Item does not contain fulltext

Item does not contain fulltext Pragmatic approaches to genetic testing are discussed and appraised. Whilst there are various schools of pragmatism, the Deweyan approach seems to be the most appreciated in bioethics as it allows a historical approach indebted to Hegel. This in turn allows the pragmatist to specify and balance principles in various contexts. There are problems with where to draw a line between what is referred to here as the micro- and macro-level of doing bioethics, unless one is simply to be classified as a principlist. Whilst most discussions on genetics occur at a macro level, most specifying must be done also at a micro level - the clinical encounter. Whilst pragmatism encourages us to understand better social and scientific factors and puts into perspective statements like 'playing God', doubts are raised about the 'consensus' process and how one can put aside fundamental values such as the moral status of the embryo on which there is general disagreement. If those doing pragmatism do not endorse these values, there seems to be little ground for process and compromise with those who do. It seems therefore that pragmatism cannot ignore values, even those which are not endorsed by everyone.

Item does not contain fulltext The development of palliative care is increasing the interest in the moral problems that arise in the practice of palliative care. It is not clear how caregivers deal with these moral problems. In this article, we focus on the decision whether to continue treatment or to withhold it, and discuss the way caregivers deal with this question amongst themselves and in communication or consultation with the patient. We look at moral deliberation, the process of identifying the crucial arguments for this decision in palliative care.

Contains fulltext : 48111.pdf (Publisher’s version ) (Closed access) OBJECTIVE: To identify medical and psychosocial risks that could arise from allowing older men to father children through in vitro fertilisation (IVF) or intracytoplasmic sperm injection (ICSI). DESIGN: Literature review. METHOD: The databases Medline, Current Contents weekly, Current Contents archives, and PsycINFO were searched over the period 1970--June 2004 for articles with data on age limits for men entering IVF/ICSI programmes. The following inclusion criteria were used: availability in the Netherlands and written in English or Dutch. RESULTS: Although sperm quality decreases with age, men remain fertile up to an advanced age. The risks of having children with autosomal dominant disorders or chromosomal defects increase slightly, but the individual chance is extremely small. Studies on the psychological development of children with fathers aged > 50 years are lacking. Extrapolation from other studies indicates that growing up with an older father has no negative influence on child development. Although older fathers have a greater chance of dying sooner, the absence of the father does not contribute significantly to psychological problems in offspring later in life. CONCLUSION: There are no medical or psychosocial arguments to support an age limit for men entering an IVF/ICSI programme.

Item does not contain fulltext Working as a multidisciplinary or interdisciplinary team is an essential condition to provide good palliative care. This widespread assumption is based on the idea that teamwork makes it possible to address the various needs of the patient and family more effectively. This article is about teamwork and about the effectiveness of teams working in palliative care. First, the nature of teamwork will be highlighted. Second, attention will be paid to team effectiveness; what exactly is team effectiveness and with what parameters can it be measured? Third, the nature of moral reflection and moral deliberation in palliative care will be highlighted. A concrete process of moral deliberation will be described. In conclusion, we shall argue that the capacity for moral reflection is a feature of a team working effectively.

Contains fulltext : 39312.pdf (Publisher’s version ) (Closed access)

In 2005 the European Society for Philosophy of Medicine and Health Care (ESPMH) initiated an annual contest for young scholars. Every year an ESPMH prize is awarded to a scholar younger than 35 years of age for a scientific contribution on ethical, epistemological, or other philosophical topics relating to medicine and health care. The first paper in this issue, ‘On the relationship between individual and population health’, has been written by the winner of this prize in 2007, Onyebuchi A. Arah. Compared to the idea of individual health, ‘population health’ is a relatively new, rather fashionable term in the field of medicine and health care. The relationship between individual and population health is partially built on the dichotomization of medicine into clinical medicine and public health. Individual and population health are often seen as absolute and independent concepts. Onyebuchi A. Arah argues that the relationship between the two is largely relative and dynamic. His argument is based on an attempt to include a population perspective on health in definitions of health, particularly by emphasizing the role of the ‘context’ component of any notion of health. The second contribution in this issue, written by Shawn H. E. Harmon, also deals with public health, but this paper is more practical in nature. After having reminded us of the fact that public health is a multidisciplinary and complex phenomenon, the author argues that public health promotion is a moral duty and that, although multiple actors are relevant and necessary to fulfilling this duty, the role of international actors is paramount. The paper especially focuses on one of the most important international organizations in this field, that is, the World Health Organization (WHO). Shawn H. E. Harmon argues that better health can and must be better promoted through a more robust interpretation of the WHO’s role. Together with other international organizations, he argues, the WHO has not yet played its necessary part in promoting ‘health for all’. The third paper, written by Rui Nunes, Guilhermina Rego and Christina Brandao, leaves the difference between individual and public health for what it is. The authors evaluate the role of independent regulatory agencies in the field of health care, as compared to the role of traditional public regulations, with regard to a fair process of equal access to health care and of setting limits to health care. In their argument Norman Daniels’ and James Sabin’s theory of accountability for reasonableness plays a central role. The authors conclude that accountability for reasonableness should be regarded as a landmark of any health care reform. The rationale for limit-setting decisions must be clearly communicated toward the public. Karin Dahlberg, Les Todres and Kathleen Galvin focus on individual health care. They critically review the common standard of ‘patient-centred’ or ‘patient-led’ health care and argue that current patient-led approaches hinder a focus on a deeper understanding of what patient-led care could be. Based on various phenomenological and existential insights they present an alternative interpretation of patient-led care which they call ‘lifeworld-led care’. A philosophy of the person, a view of well-being, and a philosophy of care should be key elements in the further development of this ‘lifeworld-led care’. With the paper of Juha Raikka, ‘The ethical and political evaluation of biotechnology strategies’, we enter a new category of topics in this issue, that is, regulatory aspects of research and new biotechnologies. Juha Raikka focuses on W. Dekkers (&) B. Gordijn UMC St Radboud Nijmegen, 114 IQ Healthcare, Section Ethics, PO Box 9101, 6500 Nijmegen, HB, The Netherlands e-mail: w.dekkers@iq.umcn.nl

Contains fulltext : 52794.pdf (Publisher’s version ) (Closed access)

Item does not contain fulltext

Item does not contain fulltext

A gap between guidelines or protocols and clinical practice often exists, which may result in patients not receiving appropriate care. Therefore, the objectives of this systematic review were (1) to give an overview of professionals' adherence to (inter)national guidelines and protocols in the emergency medical dispatch, prehospital and emergency department (ED) settings, and (2) to explore which factors influencing adherence were described in studies reporting on adherence. PubMed (including MEDLINE), CINAHL, EMBASE and the Cochrane database for systematic reviews were systematically searched. Reference lists of included studies were also searched for eligible studies. Identified articles were screened on title, abstract and year of publication (≥1990) and were included when reporting on adherence in the eligible settings. Following the initial selection, articles were screened full text and included if they concerned adherence to a (inter)national guideline or protocol, and if the time interval between data collection and publication date was

Background: Euthanasia has been legally performed in the Netherlands since 2002. Respect for patient’s autonomy is the underpinning ethical principal. However, patients have no right to euthanasia, and physicians have no obligation to provide it. Although over 3000 cases are conducted per year in the Netherlands, there is little known about how decision-making occurs and no guidance to support this difficult aspect of clinical practice. Aim: To explore the decision-making process in cases where patients request euthanasia and understand the different themes relevant to optimise this decision-making process. Design: A qualitative thematic analysis of interviews with patients making explicit requests for euthanasia, most-involved relative(s) and treating physician. Participants/setting: Thirty-two cases, 31 relatives and 28 treating physicians. Settings were patients’ and relatives’ homes and physicians’ offices. Results: Five main themes emerged: (1) initiation of sharing views and values about euthanasia, (2) building relationships as part of the negotiation, (3) fulfilling legal requirements, (4) detailed work of preparing and performing euthanasia and (5) aftercare and closing. Conclusions: A patient’s request for euthanasia entails a complex process that demands emotional work by all participants. It is characterised by an intensive period of sharing information, relationship building and negotiation in order to reach agreement. We hypothesise that making decisions about euthanasia demands a proactive approach towards participants’ preferences and values regarding end of life, towards the needs of relatives, towards the burden placed on physicians and a careful attention to shared decision-making. Future research should address the communicational skills professionals require for such complex decision-making.

Contains fulltext : 120591.pdf (Publisher’s version ) (Open Access) Radboud Universiteit Nijmegen, 04 december 2013 Promotores : Leeuwen, E. van, Feitz, W.F.J. Co-promotor : Dekkers, W.J.M.

Contains fulltext : 128543.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To identify instruments or components of instruments that aim to measure aspects of a caring culture-shared beliefs, norms and values that direct professionals and managers to act caring in hospitals, and to evaluate their psychometric properties. DESIGN: Systematic review. DATA SOURCES: PubMed, CINAHL, EMBASE, PsychInfo, Web of Science and the International bibliography of the Social Sciences. STUDY SELECTION: Peer-reviewed articles describing (components of) instruments measuring aspects of a caring culture in a hospital setting. Studies had to report psychometric data regarding the reliability or validity of the instrument. Potentially useful instruments that were identified after the title and abstract scan were assessed on relevance by an expert panel (n=12) using the RAND-modified Delphi procedure. RESULTS: Of the 6399 references identified, 75 were examined in detail. 7 studies each covering a unique instrument met our inclusion criteria. On average, 24% of the instrument's items were considered relevant for measuring aspects of the hospital's caring culture. Studies showed moderate-to-high validity and reliability scores. Validity was addressed for 6 of the 7 instruments. Face, content (90%) and construct (60%) validity were the most frequently reported psychometric properties described. One study (14%) reported discriminant validity of the instrument. Reliability data were available for all of the instruments. Internal consistency was the most frequently reported psychometric property for the instruments and demonstrated by: a Cronbach's alpha coefficient (80%), subscale intercorrelations (60%), and item-total correlations (40%). CONCLUSIONS: The ultimate standard for measuring a caring culture in hospitals does not exist. Existing instruments provide partial coverage and lack information on discriminant validity, responsiveness and feasibility. Characteristics of the instruments included in this review could provide useful input for the design of a reliable and valid instrument for measuring a caring culture in hospitals.

Item does not contain fulltext

Contains fulltext : 117881.pdf (Publisher’s version ) (Open Access) BACKGROUND: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural palliative care is, however, largely lacking.This paper aims at describing elements of both the physical workplace and the cultural-social context of the palliative care practice, which are imperative for the use of teleconsultation technologies. METHODS: A semi-structured expert meeting and qualitative, open interviews were deployed to explore professionals' assumptions and wishes, which are considered to contain latent presumptions about the practice's physical workplace and latent elements of the cultural-social context, regarding (1) the mediating potential of audio-visual teleconsultation, (2) how the audio-visual teleconsultations will affect medical practice, and (3) the design and usage of the teleconsultation technology. We used a qualitative analysis to investigate how palliative care professionals interpret the teleconsultation package in preparation. The analysis entailed open and axial coding techniques developed in a grounded theory approach. RESULTS: Respondents assume: 1. teleconsultation will hinder physical proximity, thereby compromising anamnesis and diagnosis of new or acutely ill patients as well as "real contact" with the person behind the patient; 2. teleconsultation will help patients becoming more of a pivotal figure in their own care trajectory; 3. they can use teleconsultation to keep a finger on the pulse; 4. teleconsultations have a healing effect of their own due to offered time and digital attention; 5. teleconsultation to open up an additional "gray" network outside the hierarchical structures of the established chain of transmural palliative care. This network could cause bypassing of caregivers and uncertainty about responsibilities; 6. teleconsultations lead to an extended flow of information which helps palliative care professionals to check the stories of patients and medical specialists. CONCLUSIONS: Professionals assume teleconsultation co-defines a new patient-professional relationship by extending hospital-based caregivers' perceptions of as well as attention for their patients. At the cost, however, of clinical and personal connectedness. Secondly, a hermeneutics is needed to carefully interpret teleconsultation images. Thirdly, teleconsultations transform caregiving cultures as formerly separated care domains collide, demanding a redefinition of roles and responsibilities.

Item does not contain fulltext Tissue engineering--part of regenerative medicine--is a promising technology that could potentially offer elegant solutions to urogenital defects, but so far, it has fallen short of its potential. Within experimental studies for bladder and urethra reconstructions, two clinical applications have been described, but extension of these techniques to the broader urological patient population has not happened so far. In this article, we aim to identify the ethical road blocks in the clinical evaluation of tissue-engineered products under the European Medicines Agency and Food and Drug Administration regulations for pediatric urological conditions and, ultimately, to recommend strategies to overcome them. The use of human tissue-engineered products (HTEPs) to treat children with congenital urogenital defects poses challenges in the clinical testing phase, connected to three features of the application of this treatment in this patient group: (1) those associated with the product, namely, the multifaceted complexity of the HTEP; (2) those connected to the procedure, namely, the lack of a randomized controlled trial (RCT)-tested gold standard to compare the new treatment to and difficulties surrounding standardization of the treatment protocol; and (3) the patient's young age and associated problems concerning possible long-term effects and the informed consent process. Due to these problems, a conventional RCT is not the methodology of choice to evaluate this treatment in this patient group. The unpredictability of HTEPs necessitates stringent and long-term surveillance and registry to ensure the safety of patients treated with these products.

There is interest in more and better interaction between civil society and actors developing nanotechnologies, nano-materials and nano-enabled products: government agencies but also branch organizations in the chemical sector position civil society organizations (CSOs) as ‘voices of civil society’, and invite CSOs to participate in multistakeholder events. In such events, CSOs are expected to articulate societal needs, issues and values so that these can be taken up by actors with institutional roles and mandates to develop and embed newly emerging nanosciences and nanotechnologies (NEST). This article argues that such a division of moral labor between CSOs and nanotechnology actors is not productive to address NEST and its emerging societal issues. There is an assumption that societal issues are ‘out there’ and can be recognized by CSOs, while in fact, societal issues might co-evolve with new development trajectories and thus have to be discovered and articulated. More productive deliberation requires, ideally, overcoming the traditional division of moral labor between these two groups of actors: technology developers should also inquire into and articulate emerging societal issues, and CSOs should inquire into and reflect on actual development trajectories. In order to explore issues and repercussions that arise in such a repositioning, this article will discuss a bottom up experiment of such an interaction between a nanotechnology developer (DuPont) and a CSO (Environmental Defense Fund). Based on the empirical analysis of this bottom up experiment, tentative requirements will be developed for how joint inquiries between technology developers and CSOs can be realized on a larger scale in our society.

Item does not contain fulltext Theranostics signals the integrated application of molecular diagnostics, therapeutic treatment and patient response monitoring. Such integration has hitherto neglected another crucial dimension: coproduction of theranostic scientific knowledge, novel technological development and broader sociopolitical systems whose boundaries are highly porous. Nanodiagnostics applications to theranostics are one of the most contested and potentially volatile postgenomics innovation trajectories as they build on past and current tensions and promises surrounding both nanotechnology and personalized medicine. Recent science policy research suggests that beneficial outcomes of innovations do not simply flow from the generation of scientific knowledge and technological capability in a linear or automatic fashion. Thus, attempts to offset public concerns about controversial emerging technologies by expert risk assurances can be unproductive. Anticipation provides a more robust basis for governance that supports genuine healthcare progress. This article presents a synthesis of novel policy approaches that directly inform theranostics medicine and the future(s) of postgenomics healthcare.